Pioneer: Hospice care is about life, not death

Editor's note: This is the first in a three-part series on hospice care that will run on consecutive Sundays.

Susan Nolan

Editor's note: This is the first in a three-part series on hospice care that will run on consecutive Sundays.

He writes poetry, swims in the icy Atlantic, meditates at the Portsmouth Athenaeum and speaks at conferences across the United States. But Dr. Patrick Clary said the love of his life is his work as a hospice doctor. And he regularly makes house calls.

"Meeting with patients and families, often sitting for hours at a time, is the most important work I do," said Clary, medical director for the Rockingham VNA Hospice. Getting to know his patients personally, he said, is crucial.

"These meetings allow us to come up with a plan of care which matches treatments to a patient's goals," he said. "These meetings aren't 'death panels.' They are about life."

And so are his house calls.

Clary made those house calls to Evangeline "Van" Eresian at RiverWoods in Exeter during her final months of life, and her husband John remains grateful to this day.

"He's quite a guy," said John Eresian. "My children and I are eternally grateful. They (Clary and his hospice team) knew just how to fit in ...; and it made my wife Van's final three or four months as comfortable and painless as possible."

"I can't get over Patrick Clary's enthusiasm for promoting hospice care," he said. "He deserves a lot of credit."

Alda Irons, 96, a former Exeter resident who now lives at the Ernest Barka Assisted Living Community at Rockingham County in Brentwood, agrees. She said Clary's home visits to her have been a blessing.

"Patrick is wonderful," Irons said. "Just delightful."

Carrying a black leather satchel, reminiscent of the old town doctors' bags of yesteryear, Clary began visiting Irons on Thursdays when she signed up for services with the Rockingham VNA Hospice in January 2010. Those visits — and the individualized care of nurses and aides from the Rockingham hospice — made such a difference in Iron's life over the next few months, she got better and came off hospice that spring.

While Irons' hospice diagnosis was "failure to thrive" — Alzheimer's disease, cancer and any other terminal disease can qualify a person for hospice, from one of the many hospice agencies that provide those services.

To qualify for hospice, which is paid for by Medicare and also by most private insurances, a patient must have a prognosis of six months or less to live, from such terminal illnesses as Alzheimer's, cancer and heart or lung disease. A referral to a hospice agency results in an evaluation. And it's free. An assessment incurs no obligation and can help a family make plans even if their loved one does not qualify for hospice now, Clary said.

Irons returned to hospice services in September 2011 due to heart problems and has continued to receive care from Rockingham VNA Hospice ever since.

While most patients don't "graduate" from hospice as Irons did, Clary, who has been involved in hospice for nearly 30 years, said statistics show patients with terminal diagnoses who are signed in to hospice live longer than those who die without hospice.

For Clary, hospice is about living the last chapter of life well. And, unlike many physicians, this doctor actually talks about the end of life — death.

"Sure, doctors are afraid of death," said Clary, who saw more than his fair share as a young Army field medic in Vietnam in 1969. "We're taught to see death as a failure, so it's hard to face when it approaches, especially if we love our patients. We end up 'protecting' each other by not talking about death, so it comes on us as a surprise. Yet, it's no surprise most of the time."

Avoiding the subject can rob patients and their families of the opportunity to prepare for death, to reconcile, to say goodbye and to live out the last days, weeks or months of their lives in meaningful ways. And it can deny them good closure.

Most families welcome the honesty and the opportunity. It helps them begin to make plans, deal with relationship issues and set goals, Clary said.

"There are skills involved in having these conversations," said Clary, who is certified by the American Board of Hospice and Palliative Medicine as well as by the Board of Family Practice. A graduate of Georgetown University School of Medicine, Clary first began honing those skills as a resident in New York City, where he worked with AIDS patients in the early 1980s at the beginning of the outbreak, a time when the disease almost always ended in death.

His experiences have enabled him to look at death without fear and to help his patients face death and to live well despite the threat of it.

Clary is also head of Palliative Medicine at Exeter Hospital and medical director at the Strafford County Home. He has been involved in hospice and palliative care for more than two decades, long before it became a formal subspecialty recognized by the American Board of Medical Specialties.

For the past three years, under the auspices of Exeter Hospital, Clary has been coaching doctors and nurse practitioners from New Hampshire and surrounding states to become board certified in hospice and palliative care.

Clary is recognized as one of the pioneers in the field of hospice care in New Hampshire, and is a longtime member and past president of New Hampshire Hospice and Palliative Care, the umbrella organization that represents more than 25 hospice agencies in the state.

Clary is dedicated to helping the dying live meaningfully. "Hospice is not a place," he said. "Hospice is a way of supporting people with terminal illnesses so they can have the highest quality time possible."

While you would expect Clary to write a lot of prescriptions for pain medication, his most common prescription is for "the five tasks of relationship completion" identified by his colleague and friend of 30 years, Dr. Ira Byock, director of Palliative Care at Dartmouth-Hitchcock Medical Center. Byock is also a renowned author and nationally known leader in hospice care. The five tasks include asking for and offering forgiveness, saying I love you, expressing gratitude and saying goodbye.

"I say goodbye to all of my patients who seem capable of hearing that," Clary said, "and I thank them for the privilege of taking care of them. Caring for them is a privilege that has also taught me important truths about living and dying."

Byock said Clary was one of the reasons he moved to New Hampshire.

"He has been instrumental in key initiatives to improve pain management, educate physicians and other health care professionals, and to expand and extend hospice and palliative care services throughout our state," Byock said. "His energy and insights are invaluable."

Byock said Clary is "as busy as any physician I know," but adds he always makes time to see patients who need his care, talk with colleagues, serve on committees of the New Hampshire or National Hospice and Palliative Care organizations, and teach at conferences.

"It is hard to imagine the field of hospice and palliative care in northern New England without Dr. Clary's countless contributions," he said.

Clary also is known nationally for his efforts on behalf of hospice.

"Patrick has been involved in advancing hospice and palliative care for many years — in New Hampshire and through his support of our work at the National Hospice and Palliative Care Organization," said J. Donald Schumacher, president of the Alexandria, Va.-based organization. "His dedicated efforts continue to make a real difference in ensuring that quality care at the end of life is available to all."

For Clary, hospice is a calling. "If I didn't have to work, I would do it anyway," he said. "It is the most gratifying work I have ever done. Hospice is about life."

Clary works with a team of trained hospice professionals. Each patient is assigned a nurse, nursing assistant, social worker and a chaplain. Most are also assigned volunteers.

The first order of business is to see that a patient is physically comfortable. "Effective pain management cannot be 'Googled'," Clary said. "An advocate who wants a loved one to be comfortable needs the help of skilled clinicians."

Among many other skills, they are trained to diagnose pain in patients who cannot communicate. Once pain and discomfort is managed, other quality of life issues can be addressed. In addition to dealing with the five tasks of relationship completion, Clary's patients are given plans of care that match their own goals.

It may be music, a last birthday party or the assurance that someone will be there to hold their hand when they die. But whatever the patient's goals, Clary and his team do their best to meet them. And they hold the hands of family members as well.

"As you face the end of life, you face losing everyone you love," he said. "You face losing your place. Your country. Your language. Everything. And in the face of that loss there are some things you can do to help the people who are going to go on without you."

But his work with patients, said Clary, is about how you live. "The work I do is intended to get people to a place where they can do the spiritual work they need to complete their lives ...; to bring their lives to what they consider to be a good end. To say goodbye to the people they love."

Hospice facts

Statistics from the National Hospice and Palliative Care Organization for 2010:

1.581 million: Estimated patients who received hospice services in the U.S.

Location of patients at death

Private residence: 41.1%

Nursing home: 18%

Residential facility: 7.3%

Hospice inpatient facility: 21.9%

Acute care hospital: 11.4%

Patient age: 82.7% of patients were age 65 or older, and more than one-third were 85 or older.

Top primary diagnosis

Cancer: 35.6%

Heart disease: 14.3%

Debility unspecified: 13%

Dementia: 13%

Lung disease: 8.3%

Hospice availability

5,000: hospice programs nationwide. The first program opened in 1974 and today hospices are in all 50 states, the District of Columbia and Puerto Rico.

Organizational status

36.2%: of agencies have not-for-profit tax status, while 58% have for-profit status

Medicare hospice benefit: Enacted by Congress in 1982 and is the predominant source of payment for hospice care. 88.7% of hospice patients are covered by the Medicare hospice.

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